Wednesday, August 31, 2011

up up and away

Caring for Maggie requires a concerted effort by a number of different individuals working separately and together.  Everybody has his or her role and when everybody is in sync, amazing things can happen.  I was thinking that and working on an idea for a post when I came across this picture that illustrates it perfectly. 

That's Jonathan Trappe, an adventurer from North Carolina crossing the English Channel in a seat attached to a cluster of helium  balloons.  Every balloon had to do its job for this to work. He also needed patience  to wait for the right weather conditions, safety precautions if something went wrong, and most of all, an adventurous spirit willing to break a few rules.  It's also wise to avoid items with sharp edges 

If a picture is worth 1000 words, you can thank Mr. Trappe for saving you from having to read those words. Well, at least today you didn't have to.  Things are still rattling around in my brain. 

Tuesday, August 30, 2011

Taking it up a Notch

There are many people who enjoy shopping. I am not one of them. If there is something I need to buy, I will happily go to the appropriate store and buy it, but I am not interested in wandering around in a shopping mall for entertainment. My daughter, on the other hand, would like to do nothing else.

Every weekend I get, "Mom, I want to go to the mall." or "Mall, please." This generally starts around 7:00AM and doesn't let up until we go. For the first few hours I say, "Right, I know, But we have to wait for it to OPEN." That cracks her up. This past Saturday was no exception.

I decided early that I could not bear another aimless trip to Stonestown, the mall closest to us. I told her, "You want to go to a mall, I'll take you to a huge one with lots of stuff to see." We headed downtown to Bloomingdales in the Westfield Mall which is right next door and connected to the San Francisco Centre Mall. It is heaven for a mall rat like Maggie.

The big parking lot is behind these malls and you can enter from Mission Street. I will say the wheelchair entrance is about as circuitous as possible. You have to go up to the 5th floor theater level and walk through the cavernous theater lobby and then go down a separate elevator to the 4th floor get to the mall. It's accessible, but a complete pain.

Once you arrive, though you are treated to a view of the dome from the old Emporium Store. I'm so glad they saved this. It's stunning and brings back such fun memories of Downtown SF of yesteryear. (Perhaps this is the proverbial glass ceiling.)

You really cannot help but smile when you see it, whether you remember the old Emporium or not. It is just so beautiful and the area is completely filled with light.  Maggie didn't react at all, at first, because her chair is designed to keep her head facing forward. She was looking at all the people, oblivious to what was above her. Steve tilted back her chair and she reacted immediately. It was great to see her appreciate the beauty.

 We wandered over to the San Francisco Center with it's fabulous curved escalators. Maggie could not go on those in her chair, of course, but she thought it was pretty funny when I went up and kept waving to her. She waved back with all her might. 
This is taken from the top of the escalator,. I got on right behind them and rode up 
curving around in a half circle which  left me right where this picture is taken. 

We didn't buy anything on our shopping trip. This was just to give Maggie another experience and prevent me from going out of my mind. . I'm not sure it was a good idea, though. This may now be the expectation when she says she want to hit the Mall.

Monday, August 29, 2011

Right on Target

I was shopping in Target the other day loading up on all those household essentials. Somehow I'll bet my household essential are different than those of other households.

As I was passing the women's sports apparel I noted some sports bras in bright colors. These are the ones that you just pull on over your head - no clasp. I bought a couple for Maggie.  While she may not be athletic, these are perfect for her. Trying to fasten a clasp on her back would be impossible.

The next section over was the baby stuff and I bought a case of diaper wipes because 1) we go through hundreds of them and 2) they are a lot cheaper if purchased in  bulk.

As I put my purchases up on the conveyor belt I had to wonder how many other moms are buying bras and diaper wipes at the same time for the same person.

Don't be jealous.

Friday, August 26, 2011

Friend from the past

I had a strange "visitor" from the past yesterday. As I was standing in front of the clinics at UCSF waiting for my car to come up from the parking lot,* I noticed a familiar car sitting at the curb. It looked like our old van. I walked toward it and saw that the license plate was different, but I was pretty sure it was the same car.The distinctive gold color, the Giants sticker on the back, the remains of some other sticker on the passenger side mirror and, of course the bulky wheel chair lift visible through the darkened windows. I snuck this picture while I waited.

I could not tell if the body of the van was modified or not. Mine was not and that's why we had to sell it. Because the floor of the van was not lowered to accommodate Maggie in her chair she became too tall to ride in it. Her head was practically touching the ceiling when we got rid of it three years ago. It worked fine when we originally put the lift in because Maggie was so little, but once she started to grow it became problematic. Still,  that van was part of our life for 12 years. We purchased it the day Tim finished Kindergarten and donated it a month after he graduated from high school.  That's a long time and it holds a lot of memories.

There was a man sitting in the van but he looked harried (as many people do waiting in front of UCSF) and I thought approaching him would just be too weird. But I couldn't just let it go. The valet parking guy talked to the driver and he got out of his car to respond. I figured this was my chance. Just as he was getting back in I said, "Excuse me sir. I think this is my old car." His eyes flashed with anger and he said in a very thick accent, 'NO, this is MY car."   I put my hands up and said "NO NO NO, I understand it is your car now, but I believe this is the car I used to own." Now he was interested. He said he bought it for his daughter who uses a wheelchair.

Makes sense to me.

To confirm, I asked whether or not the floor was lowered. Initially he did not understand the question but then he looked sad and said, "No, and now my daughter is getting too tall and her head is touching the ceiling." I told him that was exactly why we had to get another one. He said, "You have another one? Is it for sale." No, sorry. We use it every single day.  My van arrived just then and I waved goodbye to the nice man and another goodbye to my old car, pleasantly surprised at the memories this stirred up.

It seems totally random that three years later I should see my old car, but I suppose it makes sense. Pretty much anyone who bought that car would have to have a disabled child because an adult would be too big for the configuration of the car. And anyone with a child in a wheelchair in San Francisco will be at UCSF at some point. Whether it was random or a mathematical probability, it was still quite a sweet little moment.

If we were younger and drank lattes instead of ferrying around our disabled daughters, we could have been in this commercial. Just so you know, I would be the thin young woman with the fancy car.

*There have been many medical and scientific breakthroughs, but valet parking at no additional cost is the single greatest achievement at UCSF in the 17 years I have been taking Maggie there.

Wednesday, August 24, 2011


The sleep study was an abject failure. How hard is it to flunk a test where all you hav to do is sleep? Well, for Maggie not too hard.

It started out with a bit of drama. I read every direction meticulously and followed them to the letter. I spent an hour getting all her morning meds ready, labeled and with copies of the prescription verifications according to the directions. Of course they couldn't use any of them. We came home and did her meds here this morning. 

.Also, I didn't bring anything for myself. My plan was to wait for her to fall asleep and leave her in the care of the critical care nurses in the ICU and the tech who was to be sitting the the room all night. My house is 10 minutes a way. I could sleep in my own bed for a few hours. The tech was clearly a little freaked out by maggie's extreme needs. and told me it was their "policy" that parents stay for the duration of the test. I told her I read everything cover to cover and it didn't say that anywhere. 

One of my chief complaints is the amount of work that is expected of parents when their child is in the hospital. And the more complicated the child, the more is expected of the parents. Of course I want to be there for my child, don't misunderstand. But I want to be her MOTHER for once in my life. She is scared and I want to comfort and care for her, not be the unpaid medical assistant. 

Momma was not pleased by this unwritten, unspoken "policy".Maggie is being charged for a bed in Intensive care, there is a lovely competent nurse assigned to her, they all know Maggie (she was greeted like a rock star) and Maggie wasn't even sick. The tech went to get her manager. Steve dealt with them as I went upstairs to visit someone I know who was inpatient. This "policy" was being explained to him when the nurses in the ICU overheard what was going on. Seems no one asked them what they thought.  When they got wind of the tech's position they said that's ridiculous. Of course we can handle Maggie. Admittedly, most parents want to stay, they want to provide the comfort for their chlid. i want to do that too, but I don't get to. Most parents don't have to a child that sleeps with a nurse by her side every night. Maggie is comfortable with it, we are comfortable with it, and we deal with this 24 hours a day 7 day of the week. 

Turned out to be moot, because Miss Maggie never fell asleep. And neither did I.She went in with a great attitude and cooperated as much as Maggie can when the probes were put on. But she simply could not take the CPAP. It freaked her out. One side benefit that was bittersweet - with the trach sealed and the air going in, I coul head Maggie's "voice" for the first time in years. That was great - but the sounds she was making were sad and that was not great. She did not like the pressure going into her lungs. She flailed and acted a bit panicked every time it was hooked up. 

For an idea of how the night progressed, here are the before/prep and after pictures.

Tuesday, August 23, 2011

No cram exam

We are off to UCSF for a sleep study for Maggie. This is the kind of a test I would ACE - I'm a goooood sleeper.

Maggie will be admitted to the ICU at 7:00PM, hooked up to dozens of electrodes and then she's supposed to sleep. There is no pain involved but there are plenty of interesting things to keep her awake. Preventing Maggie from yanking on the electrodes will be interesting. Getting her to settle in for the night with all the noise of the ICU and all those things attached to her head will be a trick, that's for sure. On top of that, they will be trying out CPAP (continuous positive airway pressure) into her trach. They tired this once before prior to the trach and Maggie could not tolerate it. The doctor assumes that was the mask on her face and now that won't be necessary because the pressure will go directly into her trach. Seems likely - Maggie hates things on her face - but Maggie decides what Maggie will tolerate. It's her world, we're all just living in it.

And there BETTER not be a PEA under that mattress, either.

This could be a looong night.

Monday, August 22, 2011

Maggie the Mugger

I just received this picture from Mr. David, one of the paras in Maggie's classroom. Maggie snagged his wallet.

It looks like the pickpocketing class really paid off, but we are going to have to work on the getaway.

Nice Wheels!

Little kids are hilarious. If you listen to what they say, you cannot help but laugh. I especially love to listen to kids ask their parent questions about Maggie.

After this many years of pushing her around in public I recognize the curious tilt of the head of a 3 year old seeing Maggie and her gear. If its possible and not obvious or intrusive, I try to hear what they have to say. Often it will be why is she in that chair? Or what happened to her? Moms will generally just tell them it’s a wheelchair and she can’t walk of something equally straightforward. Once in a while the adults response makes me cringe, but not usually. The kids questions never make me cringe. They are kids. They are learning. How will they learn if they don’t ask?

Last week Maggie and I walked all over the place doing errands. I didn’t want to take the car because all the people attending  the huge concert in Golden Gate Park were parking in my neighborhood. Any time saved by driving to do my errands would be used tenfold looking for parking upon our return.  We walked to the pharmacy, the grocery store and the bakery. There were a lot of bags hanging off the chair.

As we left the bakery, I saw a mom with two little boys, maybe three and four years old.  The little one looked at Maggie for a minute and then cocked his head. I slowed down because I knew he had questions. I wondered if it would be about Maggie, the computer attached to the front of the chair,  or all the bags hanging off the back  It was none of these. He  turned to his mom and announced loudly,

Now that has a lot of wheels. There’s a front one and a back one and a front one and a back one.

I tried not to laugh. It was a perfect observation . Maggie Schmaggie! Equipment? who cares? This baby had WHEELS! 

The mom’s response was equally perfect.  Without missing a beat she found a “teachable moment.” She said, “and how many is that?” He sighed and said in a quite exasperated manner,  “I don’t know.”  Mom:  “Well, count them.”  Boy (clearly tired of teachable moments):  “I already did, there’s a front one and a back one and a front one and a back one.”

I wanted to turn around and high five both mom and boy, but I did not even make eye contact. I did not want to spoil this perfect interaction.

Saturday, August 20, 2011

Friday after a long week

It seems I am not the only one having a little trouble adjusting to the new schedule. You saw in the last post how perky and happy Maggie was to start school on Monday morning. Well she was OUT OF GAS by Friday morning. I sent her to school and on of the praras (aides) iu her class snapped these and put them on my facebook. I love the first one - Maggie is trying to stay awake and look interested, but it ain't working. By the second one, she's given in to it

It seems a low key weekend may be in order. 

Enjoy your weekend folks

Friday, August 19, 2011

Laying in supplies

First week of school and so much to do. I do enjoy the free hours while Maggie is in school, those were in very short supply all summer. However, I am trying to gt myself back into the morning routine. Still lots to do before she gets out of here every morning and I haven't found my rhythm yet. In fact as I started to write this I realized I didn't give Maggie a supplemental feeding this morning. Sheesh! I sent my kid to school without breakfast.

The schedule is different this year. The bus is coming later in the morning and returning a bit later in the afternoon. I never fed her before school before because the night feeds were just turned off. Now with the extra 30 minutes, there is too long of a time between the end of the night feeding and her first feeding at school. Uhhhh. No wonder she looked a little blah this morning. She was hungry. There goes mother of the year. Slipped through my fingers in August!

The first day was all about gathering the supplies she needed for school. This is like the opposite of a squirrel storing up for the winter. Instead of a little bit everyday, we had to get all her supplies set up so that the nurse at school has everything she needs. I'm not talking pencils and notebooks either. I had to gather a stash of her food, tubes, diapers and all pertinent accoutrement for those, braces, equipment etc. Maggie sat in the driveway and laughed as I carried out bag after bag of things to send to school.

For every morning the rest of the week I ran up and down the stairs getting this or that  supply that we left out on day 1. Now that it's Friday I think everything is at school where it belongs.

Maybe now I will remember to feed her.

Forest, meet trees.

Tuesday, August 16, 2011

"Fall" Semester and Family,

The first day of school went swimmingly. It was great to get back in the swing of things. Oh, and Maggie had fun too!

Maggie has a new teacher this year, Mr. G, and her boyfriend Juan has moved up to the next class, but other than that everything will be the same for her. She dozed a bit during the school day, but was beyond excited when she got home. We will have to work on that schedule.

Part of her tiredness yesterday stemmed from a family gathering we had on Sunday evening. Maggie's cousin Casey was in town from Denver. We haven't seen her in three or four years, so we rounded up as many family members as we could and had dinner. Of course not everyone could make it. Some people were away or working or otherwise engaged, but that doesn't matter.One nice thing about my family, we can fill a room no matter how many people are unavailable.  I believe there were 14 people here and it was an energetic gathering. Here's a random sample. Casey with one aunt,( me) one uncle and Grandma.

        Maggie and Casey were "Kissin cousins"

The party broke up pretty early because folks had to travel home and it was Sunday night. Monday morning comes early.My brother Pat and his wife Julie both teach high school in the SFUSD, so it was a school night
for all three of these hooligans.

Finally in what I hope was not a metaphor for the new school year, I had a less than graceful face plant yesterday in the middle of an intersection. A divot in the roadway turned my ankle and try as I would to keep my balance I went down like a lump. I'm certain it was highly comical for anyone watching. If I was 17 and did that I would have died of embarrassment, but physically I would have been no worse for the wear. Instead at my advanced age I could not care less about the embarrassment factor, but I ache all over. Another reason aging is not for the young.

Have a great day out there. Look three ways before crossing the streets - two ways for traffic and one for potholes!

Monday, August 15, 2011

The MOST Wonderful Time of the Year!

See the inserted video below for all the explanation you need. Maggie's supplies look a little different, but hte idea is the same!

Saturday, August 13, 2011


Today is the 3rd Anniversary of this Blog. I started writing on August 13, 2008 when I thought my nursing was going to be completely cut off and I was going to have to place Maggie outside the home. It was a frantic time and writing about Maggie, her antics and our family life as a result of that kept me grounded. This has been the one place that allows me to really brag about my daughter, rather than reassure others about her health, her worth, or her humanity.

Maggie did not lose her nursing and didn't have to be placed outside the home. Instead, we became the "vendors" and found our own nurses with the State of California, through the Golden Gate Regional Center reimbursing us. That meant I took on the full time unpaid job of nurse manager without anything but on the job training, and this job was in addition to the 10 other jobs I have. But it's been worth it.  In the three years since then, Maggie has been better cared for, stayed out of the hospital far more, and is thriving. This was at no additional cost to the taxpayers of California.

Maggie's antics continue and her sense of humor never disappoints. There are so many things I can share, but believe it or not I actually hold back. Writing this still keeps my grounded and I enjoy doing it. I appreciate all of you who read this, including regular, occasional and accidental readers.The only thing I wish was that I knew more about who was reading this. If you are so inclined, let me know where you are and how you found this blog. leave a comment (click on the small  blue comment below this post) or, if you would rather do it privately,say so and I won't publish the comment.)If there's something you want to hear more of less of, let me know.

 I looked at my "stats" this morning and I just passed 40,000 hits. I  know in the first year there were about 8 people reading it, so things have improved over time. Thanks to all of you for tuning in.

Friday, August 12, 2011

Bend and Stretch

Note, I am a lay person, no one should rely on this information as anything other than my understanding.

Maggie has cerebral palsy, among other things. Cerebral palsy (CP) is an umbrella term for physical problems as a  result of damage to the motor area of the brain. The amount and precise type of damage dictate the level of motor impairment. In some people the CP causes high tone, causing some muscles to contract all the time making the limbs extremely stiff and hard to work with. Other kids might have low tone which makes their bodies very floppy. Maggie has a combination of the two, she can go from very tight and stiff to very loose and back the other way several time an hour. Also some parts can be stiff and other parts floppy. You just never know with her. Her specific diagnosis is spastic quadriplegia meaning all four limbs are involved, which they are, but in her case the tone in every limb and the trunk fluctuate wildly. She actually has excellent control of her arms, and good control of her legs, but her trunk and neck are particularly weak and she cannot hold herself up. She also has athetoid movements and dystonia which are involuntary movements and she seems to be flailing around at times. She knows what she wants to do and can generally do it, but it takes a lot more movement than it does for normal people.

One thing that is very difficult for Maggie is to consciously move in a specific way, especially on demand. If she thinks about it too much, it is harder for her. One example of this is asking her to bend her knees when we are changing her. Often her legs will straighten like a board because the message gets "confused" in her brain and it does the opposite. The neurologist said this is typical with Maggie's type of issues. Sometimes its behavioral - because it is fun to mess with mom or the nurses - but generally you can see that she's trying but the opposite is happening.

To get around this, we have to make her do something that causes her to bend without thinking about it. Sometimes I tap on her knees to remind her, sometimes I touch her hips to cue her etc. Sometimes those things work and sometimes they don't. She's too big and stiff to change her without some cooperation so lots of times we just wait for her to figure it out. It can take several minutes just to get her to bend her knees.

For the past couple of months we have been successful in getting her to help by using her muscle memory (my term) instead of making her concentrate. Maggie's nurse Fely taught Maggie something many years ago. She asks Maggie "how much do you love your mother?" The answer, of course, is head to toe.  Maggie points to her head and then bends her knees and touch her toes. Now when we need her to bend her knees I just say How much do you love you mother? and she automatically bends her knees to answer. (Note: if she's being funny it will only be from her head to her knees or, in a very bad case, to the chin. But that makes her laugh so hard her knees bend anyway.) She knows why we are asking and she's happy to comply.  I just find it fascinating that this works while her own best efforts often fail.

We do a similar thing to get her to let us help her in other ways too. Years ago Lydia,  her Occupational therapist, used to instruct Maggie to have a "soft body" so we could put her in her chair. She would automatically relax for a moment so we could safely get her in the chair. That still works occasionally too, but for some reason it often makes her laugh and, unlike her knees which automatically bend when she laughs, her trunk stiffens like a board. We can be trying to lower her into the chair when she starts to laugh and straightens out like a piece of steel. You have to be ready for anything to keep from dropping her. The closer you come to dropping her, the harder she laughs and the more she stiffens. It's a great game.

When I go to the doctor for my sore shoulders and tell him I have to lift my disabled child, he clucks sympathetically, but I'm fairly certain he has no idea of the daredevil tactics we undertake with each lift. I need to figure out some sort of muscle memory that will make her soften her trunk before I drop her on her head.

Maybe I can talk to these people.

 Have a great weekend!

School starts Monday!

Thursday, August 11, 2011

Squeaky wheel gets the grease - film at 11

Another crazy busy day but things are falling into place nicely. Maggie and I have already been to the regional center to pick up the monthly reimbursement for the nursing care. I have to hit the bank so I can pay them all before Monday. I was hoping to do that immediately after picking it up, but happily I received a call from the wheel chair repair guy that he was coming over. We hightailed it home. He is here working on Maggie's chair right now.Maggie can't be in the chair, so she's lying in her bed with the ipod right next to her head.  Life is good.

I wrote the other day about the bad wheel on her chair. Steve put an old one on after the front caster wheel broke. The replacement was the wrong size and SQUEEEEEEKED  and flipped around with every move. I assure you I will not miss that. There's more than just the bad wheel, though. She's getting a new tray which should lock into place better and belts that are "Maggie proof*." Maggie is like Houdini trying to show us that she can escape from anything. She undoes all the belts and and is constantly loosening the tray and trying to knock it off the chair. This is not  because she's upset mind you, but just because she CAN and needs to let us know that she can. Now unlocking the lap belt will require using a pen as a "key" which is beyond her coordination abilities, and she will have to learn the tricks of this tray before she will be able to knock it off. I'm certain that's just a  matter of time, but as long as the technology stays one step ahead of her she will be fine.

*we're not sure if this is an attainable goal

Usually I am the figurative squeaky wheel around here, but today we have an actual squeaky wheel getting actual grease! Or getting replaced to be accurate. (hmmm. I better watch out)


Tuesday, August 9, 2011

If it's Tuesday this Must be Belgium

Woke up before the alarm at 6:15 worn out because I was having the type of dreams where I’m running around getting nothing done. I can’t imagine why. I realize immediately that I forgot to buy half and half for the coffee. Bummer.  My morning ritual would be slightly altered, I would have to drink my coffee black. Brush teeth, but no time for a shower. I get dressed and go downstairs.  Take the report from the nurse discussing Maggie’s low heart rate overnight, which was cause for concern. We discussed a change in her schedule due to Maggie’s upcoming overnight hospitalization for her sleep study. See nurse out, bring in paper from today and yesterday (which was never opened.) Suction Maggie, who then falls back to sleep. Run back upstairs to quickly grab some paperwork that needed attention and while I was up there I faxed the new oxygen orders to the school nurse for her files. tan back down because Maggie cannot be alone. Maggie is coughing and needs suctioning again. Worked on more Maggie papers due to a major screw up in her services (which I will discuss only when it is completely cleared up). Called the social worker to get a status update about that screw up, leave a message, receive an email response. Respond to the email. Maggie wakes up, needs suctioning. I get her ready, change her diaper, do the catheterization and put her in the chair attaching the tray, pole, and dynavox. Feed her and then play her music while I find her shoes and a jacket.  Call the supply company to order food, feeding bags and other supplies. Call the wheelchair company about the new caster for her chair and other parts that need changing. Take Maggie down in the elevator. Unload diapers and other supplies that arrived yesterday and sort them on the shelves in the basement, find dog and head for the bank to address issues with the account I use to pay the nurses. Run into a friend en route and chat for five minutes until Maggie gets antsy.  Push Maggie in her chair with the broken front wheel that sounds like fingernails on the blackboard with every revolution, and, since it’s such a small wheel, there are hundreds of revolutions. Go to the bank, chat with the employees, get the new checks I need. The bank manager offers to try to fix the wheel with bicycle grease, but I decline politely because the new wheel should be here today (they never called back). Suction her before leaving the bank. Walk home through the park so the dog can run a bit. Can’t get the chair past a city gardening truck blocking the road and have to take Maggie off road over the grass to maneuver through the park.  Worry about the wobbly wheel. Greet kids who stop practicing soccer to stare at Maggie. Ignore stares. Stop to feed Maggie at the other side of the park. Suction her again for the last few blocks to home. Stop at small store to buy half and half and bread. Carry groceries with one hand, steer chair with the other.  No curb cut, have to lower chair off the curb being careful not to land on bad wheel. Get home lift her out of chair, cath and change her, put her back in the chair, put on Maggie’s music and take her into the kitchen because she wants to cook. We make spaghetti sauce, stopping to suction Maggie every five minutes.  Nurse arrives. I give report and we discuss Maggie’s symptoms. Phone rings, it’s the new physical therapist for the school year. Discuss Maggie’s needs and medical situation. Hang up.  Text the classroom nurse to advise the bus schedule. Leave to go to Walgreens to pick up various medications and supplies. Have to wait while they fix a mistake in the charges. Smile apologetically at the people in the line growing behind me. Put two giant bags in car and see Starbucks beckining. In desperate need of caffeine, head  in and steal 10 minutes. Ahhh. Give my spot next to the electrical outlet to two college girls who need to do their final exam. Marvel at the differences since I was in school. (before internet OR Starbucks) Fully caffeinated,  walk back to the car where I run into an acquaintance who asks the same questions everyone does:
“You’re not working????  What do you DO with yourself all day?  Aren’t you bored?”
 Smile politely. 

Evil Sheila

Maggie and I had a relaxed and fun day yesterday. She kept saying "Mom I go to mall" which is a pretty clear indication that this teenager needed to SHOP! We went to Stonestown Mall because parking is easy and there are a ton of handicapped spaces. We just cruised around enjoying the ambiance, not spending any money.

I was getting Maggie situated to take a picture when I heard a friendly voice behind me say , "I thought I smelled something rotten." Maggie and I both grinned. That could only mean one person: Sheila! She was Maggie's teacher for Kindergarten to 2d grade - which was actually 4 years because Maggie did her kindergarten year twice. Sheila was the first to call Maggie out on her behavior. I sent Maggie off to school as a completely spoiled 5 year old, sheila would say "Something smells ROTTEN in here, It must be SPOILED!" Maggie would laugh her head off. Still does.

Maggie responded very well to Sheila and all the classroom staff. When she was flailing her arms all around they would instruct her to get "classroom ready" and Maggie would still herself. It was amazing. I still use that term once in a while, but I think you have to have a teacher voice to really make it work. Mom voices are scary, but teacher voices mean business! All of Sheilas students are non verbal, or have very limited language skills. She swore if they learned to talk their first words would be "Evil Sheila".  Of course the kids adored her. in fact, as we were chatting another mom approached with her son in an adapted stroller. He is a current student of Sheila's. Nice to know things continue.

I wish I thought to get a picture of Maggie and Sheila, but the conversation was too animated to stop and click a photo. Here's an old one from elementary schol graduation with the whole staff from both the K-2 and 3-5 classes. Sheila is right behind Maggie head and Emily, the 3-5 teacher is sitting at Maggie's left.

 I did remember to get one of Maggie the mall rat a bit later. (If you are on my facebook you already saw this)

Later on she listened to Dad read Harry Potter. She does enjoy the various voices he used. Especially Hagrid and Dumbledore. Not sure which one is happening here, but Maggie seems pretty happy

Have a great Tuesday!

Monday, August 8, 2011

Inquiring Minds Want to Know

Monday morning. No camp this week, it is just Maggie and me again. She is still a bit blah, but not really sick enough to go to the doctor or anything. We will just take it easy this week with short outings.

The Girls Rock camp last week was great, but it was exhausting. As the week goes on, the girls get more comfortable with one another and with the adults in the room. They also get more comfortable advocating for Maggie even though they do not have a complete understanding of what is happening with her.

Every time I fed Maggie, one or more of the girls would ask what I was doing. Fair enough. It is not every day one sees a person being fed a can of “medical food” through a gastrostomy tube. It is fascinating to watch and a bit difficult to understand, so questions are normal.  Most girls asked once, looked, were impressed and moved on.  A couple of the girls asked the same questions over and over. That is fine too; it is part of this world I live in. If I want them to understand and tolerate Maggie’s differences, I need to be tolerant of theirs.  And I am, but I would be lying if I did not admit to some frustration. Two of them were 
quite insistent that Maggie was not getting fed, despite my patient explanations about how she eats.

 On the last day, there was a party. The girls made the food -- wrap sandwiches and quesadillas. They also made cupcakes and frosted them and we made frozen yogurt. Of course, Maggie cannot ingest any of those things; but Maggie does not care. She is just pleased to be at the party.

That was not enough for two of the campers, though. They asked repeatedly if Maggie could have a sandwich. I smiled and said, “No, she can’t swallow it.” They tried again, “How about a quesadilla?” “ Nope. Besides, she is allergic to cheese." I told them,” you guys remember I just fed her and you asked about it, right?” They would not budge, “That’s was only something to drink. She needs food!”  I said, “You know girls I wish she could, but this liquid food is all she eats.”  They stared at Maggie and then looked at each other (contemplating a call to Child protective services, I am sure.) Variations of this conversation went on for several more minutes. Finally, one of the asked if Maggie could not eat because the trach tube got in the way. Though it was completely incorrect, I said yes.

 Sometimes it is easier to ride a horse in the direction it is going.  

That is right. In this educational camp, giving girls an opportunity to ask whatever questions they want in a safe environment, I lied. I am not proud of that, but the questions stopped. I doubt it will change their lives in any way at all, but I worry about either of them racing in to stop another child with a trach from enjoying a piece of birthday cake or something.  

 School starts one week from today. I am more than ready for a routine to return to this household. The fact that the school routine also gives me an opportunity for solitude after weeks of none is only incidental, I assure you.  I am interested ONLY in my daughter’s education.

Friday, August 5, 2011

Girls Still Rocking

Just checking in, which I haven't done for a few days.  It's been a crazy week. Maggie has been in Girls Rock! camp this week. Of course she can't go without a personal aide or nurse and that, my friends, is ME. Today is the last day - and I am OK with that.

Maggie doesn't really "get" the issues - but she enjoys the socialization. Or at least she does usually. This week she has been very blah all week- sort of out of it. She's fighting off something, but is still falling asleep a lot and needing some extra oxygen. Not really sick, but not great. We are still waiting for whatever this is to reveal itself. For the past six months, this has been the new and prolonged presentation of respiratory problems. There's nothing really to treat (except for the O2) but she's not exactly healthy either. As I type this she is sound asleep in her chair next to me and she just got up 30 minutes ago.  

Yesterday Maggie and I made a Girls Rock mixed CD and have been making copies for all the girls in the camp. Maggie will be quite popular with the other girls when they get these, that's for sure. 

I better go gather all that we need for the final day of camp. They don't want the aide (moi) showing up in her jammies. The idea is to make the idea of becoming a woman attractive and that sight would have the opposite effect.

Have a good weekend.

Tuesday, August 2, 2011

Pre teen and pre trach

Girls Rock Camp did not go well today. Maggie is coming down with something and making me quite nervous. She cannot seem to stay awake. She is "with it" - not lethargic (which is VERY bad) but she seems completely exhausted and she needed extra oxygen for a little bit today. She perked up later in the afternoon, but she spent her time at camp and most of the rest of the day like this, sound asleep.
You cannot see Barb who is holding her because there are other kids visible and I don't want to put up pics of kids I don't know. Barb was Maggie's physical therapist in middle school. Yesterday we saw Carmen who was her PT at the end of elementary school and today we also saw Alana, who handled Maggie is her early elementary years. Alana recently found these pictures from those days - maybe 8 or 9 years ago and shared them with me. These were from a power mobility camp. Maggie was trying to learn how to use the power chair. She still does it some, but we gave up on the joystick and now she drives with her head. It is very difficult for Maggie, but she loves loves loves doing it. 

There she is, pre-teen and pre-trach, missing teeth and all. I do miss her curly hair. It just disappeared over the years.  I always think she looks so young until I see the pictures from many years ago.

If Maggie doesn't perk up, tomorrow may be "Doctor Rock" camp instead of Girls Rock. 

Girls Rock!

My role as camp director is on hiatus once again. Maggie is in Girls Rock Camp every morning this week.  It is like an empowerment camp for girls middle school through high school. These particular girls are all clients of California Childrens' Services, though, which means they have some physical issues that require therapy. Often their differences set them apart from their peers and limit normal social interaction. Hence the "Empowerment" is more like catch up. They do crafts, learn about nutrition, their bodies etc. It is a safe place to ask questions they may not be able to ask in the normal social setting. It's not really appropriate for Maggie  but the social opportunity is great.   Of course Maggie  can't go alone, she has to have someone with her. That someone is me. Instead of Camp director, I am Maggies' aide. We go to camp together.

Don't be jealous.

Maggie didn't last long yesterday. She was grumpy and the activities were particularly inappropriate for her. She is the only one there in a wheelchair, and surprisingly there is very little accommodation  to include her. She started to cry about two hours in and we left. Hopefully today will be better.

The crying is not like Maggie at all, but we are all still exhausted from last week. That was a lot of change for Maggie to handle. She was a trooper, but I think it just completely wore her out. Couple that with my sleep deprivation hangover and you begin to see how miraculous it is that anything is getting accomplished this week.

The sleep deprivation hangover is pretty much gone now. Yesterday was the worst - it always hits me harder on day 2.. I stayed up all night Saturday because the nurse cancelled. I slept a bit Sunday morning, so I felt "OK" but just clueless about the time. The shortage catches up with me the NEXT day which was yesterday. It's not a tiredness but more of a spaciness. For example, when Maggie and I left camp we went to the pharmacy to pick up some meds. I sat at a stop sign (not a traffic light) for about 3 minutes waiting for it to give me "go" sign. A car going the other way stopped and then proceeded giving me a strange look. My first thought: what's your problem, buddy? Then it hit me. Oh. I guess I can go. Best not to drive in those situations.

Today is a new day and we have another night's sleep under our belts. We might just be the most energetic  girls at Camp today. I have caffeine to help get me there. Maggie has to rely on her sparkling personality.

 And her peppy aide.